Care and support when a baby is stillborn: A systematic review and an interpretive meta-synthesis of qualitative studies in high-income countries

PLOS ONE RESEARCH ARTICLE Care and support when a baby is stillborn: A systematic review and an interpretive metasynthesis of qualitative studies in high-income countries Margareta Persson1☯, Ingegerd Hildingsson2‡, Monica Hultcrantz3,4¤‡, Maja Kärrman Fredriksson3‡, Nathalie Peira3,4¤‡, Rebecca A. Silverstein3‡, Josefin Sveen2,5, Carina Berterö ID6☯* a1111111111 a1111111111 a1111111111 a1111111111 a1111111111 1 Department of Nursing, Umeå University, Umeå, Sweden, 2 Department of Women’s and Children’s Health, Uppsala University, Uppsala, Sweden, 3 Swedish Agency for Health Technology Assessment and Assessment of Social Services (SBU), Stockholm, Sweden, 4 Department of Learning, Informatics, Management and Ethics, Karolinska Institute, Stockholm, Sweden, 5 Centre for Crisis Psychology, University of Bergen, Bergen, Norway, 6 Division of Nursing Sciences and Reproductive Health, Department of Health, Medicine and Caring Sciences, Linköping University, Linköping, Sweden ☯ These authors contributed equally to this work. ¤ Current address: HTA Region Stockholm, Centre for Health Economics, Informatics and Health Services Research (CHIS), Stockholm Health Care Services, Sweden ‡ IH, MH, MKF, NP and RAS also contributed equally to this work. * OPEN ACCESS Citation: Persson M, Hildingsson I, Hultcrantz M, Kärrman Fredriksson M, Peira N, Silverstein RA, et al. (2023) Care and support when a baby is stillborn: A systematic review and an interpretive meta-synthesis of qualitative studies in highincome countries. PLoS ONE 18(8): e0289617. https://doi.org/10.1371/journal.pone.0289617 Editor: Pracheth Raghuveer, Kasturba Medical College Mangalore, Manipal Academy of Higher Education, INDIA Received: February 8, 2023 Accepted: July 22, 2023 Abstract Introduction Approximately 2 million babies are stillborn annually worldwide, most in low- and middleincome countries. Present review studies of the parental and healthcare providers’ experiences of stillbirth often include a variety of settings, which may skew the findings as the available resources can vary considerably. In high-income countries, the prevalence of stillbirth is low, and support programs are often initiated immediately when a baby with no signs of life is detected. There is limited knowledge about what matters to parents, siblings, and healthcare providers when a baby is stillborn in high-income countries. Published: August 15, 2023 Peer Review History: PLOS recognizes the benefits of transparency in the peer review process; therefore, we enable the publication of all of the content of peer review and author responses alongside final, published articles. The editorial history of this article is available here: https://doi.org/10.1371/journal.pone.0289617 Copyright: © 2023 Persson et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Objectives This systematic review and interpretive meta-synthesis aim to identify important aspects of care and support for parents, siblings, and healthcare professionals in high-income countries from the diagnosis of stillbirth throughout the birth and postpartum period. Methods A systematic review and qualitative meta-synthesis were conducted to gain a deeper and broader understanding of the available knowledge about treatment and support when stillbirth occurred. Relevant papers were identified by systematically searching international electronic databases and citation tracking. The quality of the included studies was PLOS ONE | https://doi.org/10.1371/journal.pone.0289617 August 15, 2023 1 / 28 PLOS ONE Data Availability Statement: All relevant data are within the paper and its Supporting information files. Funding: The author(s) received no specific funding for this work. Competing interests: The authors have declared that no competing interests exist. Care and support when a baby is stillborn: A systematic review and an interpretive meta-synthesis assessed, and the data was interpreted and synthesised using Gadamer’s hermeneutics. The review protocol, including qualitative and quantitative study approaches, was registered on PROSPERO (CRD42022306655). Results Sixteen studies were identified and included in the qualitative meta-synthesis. Experiences of care and support were interpreted and identified as four fusions. First, Personification is of central importance and stresses the need to acknowledge the baby as a unique person. The parents became parents even though their baby was born dead: The staff should also be recognised as the individuals they are with their personal histories. Second, the personification is reinforced by a respectful attitude where the parents are confirmed in their grief; the baby is treated the same way a live baby would be. Healthcare professionals need enough time to process their experiences before caring for other families giving birth. Third, Existential issues about life and death become intensely tangible for everyone involved, and they often feel lonely and vulnerable. Healthcare professionals also reflect on the thin line between life and death and often question their performance, especially when lacking collegial and organisational support. Finally, the fusion Stigmatisation focused on how parents, siblings, and healthcare professionals experienced stigma expressed as a sense of loneliness, vulnerability, and being deviant and marginalised when a baby died before or during birth. GRADE CERQual ratings for the four fusions ranged from moderate to high confidence. Conclusions The profound experiences synthesised in the fusions of this meta-synthesis showed the complex impacts the birth of a baby with no signs of life had on everyone involved. These fusions can be addressed and supported by applying person-centred care to all individuals involved. Hence, grief may be facilitated for parents and siblings, and healthcare professionals may be provided with good conditions in their professional practice. Furthermore, continuing education and support to healthcare professionals may facilitate them to provide compassionate care and support to affected parents and siblings. The fusions should also be considered when implementing national recommendations, guidelines, and clinical practice. Introduction From a global perspective, about one stillbirth occurs every 16th second, resulting in nearly 2 million annually [1]. Most (84%) stillbirths occur in low- and middle-income countries. The World Health Organization (WHO) further states that the experience of having a stillborn baby is often overlooked in national and international documents and agendas despite the psychological and economic consequences for the affected women and their families [2, 3]. The WHO defines stillbirth as “the death of a baby after 22 gestational weeks, and death occurred (...truncated)